Immune Related Adverse Events

 

Marty and Eddy, savoring the disabled-accessibility of Salishan Resort Lodge

My last post on Pseudo Progression introduced “immune related adverse events”(IRAE’s). My brief experience with IRAE’s follows.

I was on a roll with nearly boundless energy– beginning with a slight left-foot drag, motor nerve impairments piled-on and within days my left leg was paralyzed, and left arm weakened so that I cannot raise nor use it normally.

In the interval of ten days I have changed from feeling healthy, energetic, and optimistic to wheel-chair-bound and dependent on a caregiver for most adult tasks of daily living.

So_much_change_so_fast…

I had a conversation with my renter-model-wheelchair. I call him Mark, because he marks me with a small scrape or bruise whenever I try to rely on him for mobility. His edges are sharp, his seat is hard, and despite being the narrowest model available, he constantly leaves me stuck between here and there, this and that furniture or bound up in a corner.

Me– We have to talk Mark. I am not happy in our relationship. I think you probably already know where this is going…  I want a divorce.

Mark–It’s not my fault that your house is not accessible.You can’t just put me out on the street. You have no idea what happens to abandoned wheel chairs! Also I was told you had two strong arms.  I really need to be with a two-armed person.

Me–Please be gone  next week. It’s not your fault that this house is not your kind of place– enabled for ADA and that my two strong arms lasted only the first day. I wish you luck finding a compatible match next time around.

Here I am persisting with my care team, balancing treatment with palliative care and learning new coping skills with a lot of help.

Leaving prognostications, promises and prognoses hanging for now. See me still here, redesigning a life tomorrow.

 

17 thoughts on “Immune Related Adverse Events”

  1. Dear Marty,
    I have no medical or mechanical wisdom to impart, but do want to let you know we love you, are holding you in the Light and in prayer. Like many others, I admire your strength, courage, and humor in the face of all this. I continue to hope you make your oncologist famous by the way you and your body rebound from this.
    With love and hope,
    Joe

  2. Marty, you are such a special person. You are able to find the humorous and positive aspects of a difficult situation. What an inspiration you are. Just today I found the picture of you and your Mom taken when you were about 1-year old. What a handsome kid you were (who grew into a handsome man). I am also using a wheelchair now because I had knee surgery just 1 week ago and can’t put any weight on my left leg. Those things can get honorary when they want to. (#$*#!!!)

  3. I am so sorry to hear about your recent set-backs. Indeed things do change very quickly, and I so admire your ability to adapt. Is there anything Friendly Care and our Meeting can help with right now?

  4. I am in awe of the grace, courage, grit and humor that you manage to muster despite facing formidable health challenges. May this current setback be temporary, my friend. Your MMM community is holding both you and Eddy in in the Light. Know that you are surrounded by a circle of love.

  5. I’m sure you’ve investigated various motorized chairs/scooters; they get more and more large, though. I lived in one at work for a month…where they had accessible bathrooms. My office was a challenge. Home not possible.

    Love your dialogue with Mark. I hope humor helps you as much as it does us. May you be free from suffering.

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